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User

Posted 07 Jun 2014 at 10:38

Thanks to all, Brian, Barry, Julie, Carol, Lyn, Dave, Paul and Mo for your responses. I think the self catherising is always a paradoxical benefit. I know that my nights would be untenable without the relief I get just before I go to bed. Its a five minute procedure and is more or less painless. But there is this risk. Having said that I went over two months without a UTI and did this before last year. I guess once the UTI takes hold the catherising might encourage it. I'm 8 days on so far so keeping fingers crossed I get a break. Not sure Lyn there is a problem with the catheters themselves. I have used them from different batches and I get them new from the chemist. I remember reading that just a few years ago they used reusable catheters now that was an infection carrier!

Carol I agree with Eric to some extent. The pain that people go through with RP and RT with a curable diagnosis is far worse than I have had so far. I recall the impact of much less developed and focused RT when I had testicular cancer in 1982. They just blasted my stomach somewhat indiscriminately! I guess you would opt for it though as a curative state is obtainable whereas with mets the end, however delayed, is nearer! Harsh reality but just a fact! And the pain Eric is feeling must be so unbearable.

I have my diabetes appointment in a couple of weeks and will get an updated PSA from that and it will be interesting to see if there is any difference. I haven't done the blood test yet delaying to get as far from the last UTI as possible. Will do it Tuesday

If still free from infection and that would be 11 days so may get a different reading though my consultant talked of six weeks to be absolutely sure. I am not that concerned as I expect some rise given the prostate is still there and apart from the HT untreated but I hope still contained. I am treating this as another four month pass to get on and enjoy my life and still on track to complete first draft of my novel by the end of the summer. Nothing like some good news to create procrastination!

I cannot agree Mo about Hong Kong. It is my second home and I love every minute I spend there. Had seven months on sabbatical there and it was a great experience. If PCa had not come along I would be working there now but sadly that was not to be. Hey HO the fact I get to visit twice this year, if I stay fit, is more than compensation. Mulberry Lyn?

New Zealand is another treat. I went in 2012 and I thought that would be my last trip. It is a country of great beauty and the people are great. I am planning to have a few days relaxing with a close friend who moved out there. I can only take about 4/5 days official leave or it invalidates the insurance and one reason I go with work is that the insurance is not a problem.

These results are all relative to everyone else's problems. Things overall remain pretty good for me for now so I am going to enjoy that and carry on living!

User

Posted 18 Jun 2014 at 21:58

Quick update. Had my diabetic consult today and whilst it remains in reasonable order 54 (7.1 in old currency) but after discussion on the UTIs he has changed one of my tablets to see if I can lower the readings a bit and help reduce the chances of UTIs developing. But there is a slight chance of hypos on this one so I have to start regular testing and carry tablets around to avoid them, so if you see me going a little vague when you see me its just the diabetes and get me a bottle of luxazade!

I had another PSA result which is 20.75 so just a slight rise in a month so continue as before. No recurrence of the UTI for 19 days so maybe I will have a respite. Otherwise feeling ok!

User

Posted 18 Jun 2014 at 22:11

Good that there is no significant rise in the PSA Paul. Let's hope the UTI's stay at bay also.

Bri

User

Posted 19 Jun 2014 at 20:08

If you have a hypo on Saturday, does it have to be lucozade or can it be beer?

I hadn't thought to associate the UTIs with your diabetes but of course that is one of the indicators for undiagnosed diabetics isn't it?

Looking forward to seeing you and having a catch up x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 19 Jun 2014 at 22:42

Hi Paul,

That's what I like, having a ready made excuse in place....." If you see me a going a little vague" ...it's the diabetes . Whereas us regulars know exactly what causes the wobbles 🍻 and why not indeed.

Pity about the slight rise in PSA but good news on the UTI front. See you soon Paul.

Life s for living

Barry (alias Barrington )

User

Posted 20 Jun 2014 at 15:35

I have decided not to start the new tablet until after the weekend. Been out a lot this week and with Leicester etc thought it best to wait until I had a better week to get into the routine of testing etc. I think the concern Lyn about the UTI is having any sugars in the system which the bacteria can feed on and resist elimination.

I won't be drinking this weekend i'm afraid Barry, have decided to wait until well clear of the UTIs before considering alcohol again.

User

Posted 20 Jun 2014 at 16:58

Barry's sarnies, Paul's alcohol, what am I going to do ;-)

See you tomorrow

Bri

User

Posted 20 Jun 2014 at 17:23

Bloody share ithttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif

See you tomoz

Don't deny the diagnosis; try to defy the verdict

User

Posted 10 Jul 2014 at 15:54

Just a but if info if you haven't seen it. I have just signed up for this free online course run at my university, Sheffield Hallam University. The details are:

Enhancing Prostate Cancer Care

A FREE, Massive Open Online Course (MOOC) delivered in collaboration with Prostate Cancer UK and powered by PebblePad

It will run over 5 weeks duration:

13th October - 14th November 2014

A course designed and developed to bring together and draw upon the expertise and perspectives of a range of health professionals (including Oncologists, GP's, Nurses, Therapy Radiographers, Physiotherapists, Occupational Therapists, End of Life Care specialists etc. students training in these fields) patients/service users and carers.

Indeed, anyone involved with or interested in the Prostate Cancer Care Pathway, is invited to help explore ways in which this could be enhanced for the benefit of the patients, service and practitioners.

There is a different focus for each of the weeks as specified below:

Week 0 - Orientation

Week 1 - Diagnosis

Week 2 - Treatment with curative intent

Week 3 - Metastatic Disease and End of Life Care

Week 4 - Survivorship

The course will utilise the workbook functionality in pebblePad as the means of delivery ('MOOC in a Book'), which will mean you can 'take away' all of the course resources and evidence of your participation in it, at the end of the course ('MOOC to Go').

It can be accessed here on this site or see https://v3.pebblepad.co.uk/v3portfolio/shumooc/Asset/View/p9cfHh5jGR3yMsbgM97c4qw9bw

Hope to see you online. I have spoken to the course director and they have lots of health professionals but not many patients or carers,

User

Posted 10 Jul 2014 at 18:08

Paul i would love to do this. i am assuming i can do it when i am on hols in usa on the internet. Still?

User

Posted 10 Jul 2014 at 19:30

I have asked that question as I will be in Hong Kong and New Zealand. The reply was its all online so from that point if view no problem. There is a weekly webinar which would be on Wednesday but different times to suit people registered from Australia and a chat session on Thursday. All of which you can catch up on if you are not able to log in. So on that basis I have registered. Be great to have you on too. I spoke with the course leader and it is mainly health professionals at the moment so our collective perspectives will be appreciated. As its free there is noting lost but if you continue to do voluntary work it will help you with that too. Hope you are ok. Think about you most days. We need a Newark do in the summer.

User

Posted 10 Jul 2014 at 19:59

Hi Paul,

I think Karen will be interested in this course as well will give her the information when she next visits.

User

Posted 10 Jul 2014 at 20:45

Hi Paul,

Thanks for highlighting this.

I'm signed up and ready to go! :)

Best wishes

Kevin

User

Posted 10 Jul 2014 at 21:24

Paul

I have just registered so will be joining you in this educational programme. I am hoping that I can get some input from Mick's Oncologist as well, he has always told me he would do anything he could to help me progress in my chosen voluntary care.

Agree we need a get together so will send you a message in the next day or so once I have thought of something we can do.

User

Posted 11 Jul 2014 at 06:55

May take a look at this. Thanks Paul.

Newark do..... Mo said "....once I have thought of something we could do"

Mo that's a no brainer Pub, drink, eat

What ya reckon Si

Bri

User

Posted 11 Jul 2014 at 07:09

Just registered, thank you, Paul.

User

Posted 11 Jul 2014 at 09:31

Great news with the registrations, I'm sure the course leader will be pleased to get our perspectives!

User

Posted 11 Jul 2014 at 12:44

Just registered Paul,

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 11 Jul 2014 at 15:58

Paul,

Thanks for posting course details. I've registered.

Viv

User

Posted 25 Sep 2014 at 10:57

I cannot believe it's nearly three months since I last commented. But with another check up imminent it feels time to reflect on the past few months.

Firstly I had two months respite from UTIs before they returned about six weeks ago. This time I had two reoccurrences but am now enjoying nearly six weeks since the last time including a stressful trip aboard so feeling quite good. I upped the self catherising to at least three times a day, sometimes four and this may have helped the quicker recovery. I have maintained the increased ISC as it gives me respite from tripping to the loo. I go normally between 3-5 hours after ISC and then I have to pee very regularly. If I am busy or in places where loos are not easy to access this causes problems so I try and predict those situations and catherise accordingly. It's more difficult when I am out and about when I need to access a clean disabled toilet. I have seeking to get a radar key to make this easier.

Secondly my fatigue remains part of everyday life now. I am more conscious of it and have had to plan by work so that rest is built in. Though my colleagues are excellent in allowing me that respite I can be my own worst enemy by taking too much on. This leads me to a point of exhaustion when I simply have to rest. My son is great at spotting this and will warn me to slow down when I am doing too much! I know if I have to add casodex this problem will get worse so I hope next week to avoid this for now. Work remains important to me so I need to protect myself from fatigue so I can continue to enjoy the motivation it gives me.

My overwhelming reflection on the last couple of months relates to the loss of so many good men on this site and beyond. Though this happens all too frequently, wherever we are, when you meet and know such good men it rocks your own confidence and brings your own mortality into focus. As well as Mick, Peter, TopGun, Eric, Neil and Scotwiki I saw a good friend lose his battle for life in under four weeks, the primary Cancer never really identified as it was so advanced. But it also strikes me how uneven Cancer falls and therefore we have to stay positive and grasp what is before us. I have been prilivileged so far to battle for just under three years despite bone met spread with I hope some way to go too. We have seen SI and of course Allister saw huge resilience and these stories, and many others unnamed and those who eventually lost their battle gives me real hope to continue to make the most of my time ahead. I wake most days determined to get the most from the day knowing we are all vulnerable to that 100 percenter, and I will one day lose my own battle for life. I will though continue to strive to maintain and enhance my positive approach to life and use that to help others when I can.

So I am not obsessed about my check up next week but for the first time for a long time I really hope I can get another four month extension. have I a right to ask for that and should I tempt fate! Well what will be will be but I have my daughter,s wedding in three weeks which makes me so proud and I really want to be on top form for that. I am undertaking this online PCa course with Mo, Chilled and others, and I am setting off on seven weeks of work-related travel - Hong Kong, New Zealand and Hong Kong again returning on 14th December for what I hope will be another good Christmas with my dear family. Watch this space!

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